In a landmark move to address a growing global health crisis, the World Health Organization (WHO) on Thursday unveiled its first-ever global guideline focused on the care and treatment of pregnant women living with sickle cell disease (SCD). The new recommendations are designed to help health professionals improve outcomes for expectant mothers and their babies, especially in regions where the disease remains a leading cause of preventable deaths.

According to WHO, this newly released guideline responds to a significant and persistent gap in maternal care, particularly in low- and middle-income countries where most cases and fatalities associated with SCD are recorded. The document provides over 20 evidence-based recommendations aimed at improving prenatal, intrapartum, and postnatal care for women affected by the inherited blood disorder.

Understanding Sickle Cell Disease and Pregnancy Risks

Sickle cell disease is a genetic blood disorder marked by the presence of misshapen red blood cells that resemble sickles or crescent moons. These abnormal cells are prone to sticking together, obstructing blood flow, and impairing oxygen delivery to various tissues in the body. As a result, individuals living with SCD often experience chronic anaemia, severe pain episodes known as sickle cell crises, frequent infections, and an increased risk of life-threatening complications such as stroke, sepsis, and organ failure.

For women, the risks posed by SCD escalate significantly during pregnancy. The physiological changes associated with gestation—particularly increased oxygen and nutrient demands—can place severe strain on the circulatory and immune systems of women with SCD. WHO reports that these women face a maternal mortality risk that is four to eleven times higher than that of women without the disorder. They are also more likely to suffer from obstetric complications such as pre-eclampsia, and their babies face elevated risks of premature birth, low birth weight, and stillbirth.

Aiming to Close a Long-Ignored Gap

Speaking on the motivation behind the guideline, Dr. Pascale Allotey, WHO’s Director for Sexual and Reproductive Health and Research, highlighted the need for global awareness and action. She noted that while advances in health care have improved outcomes in high-income nations, millions of women in resource-constrained settings continue to suffer needlessly.

“With access to quality health services, women with genetic blood disorders such as sickle cell disease can experience safe pregnancies and deliver healthy infants,” Allotey emphasized. “This new guideline represents a vital step toward improving outcomes. However, it must be matched by increased investment in health systems, diagnostics, and patient education.”

She further stressed that sickle cell disease, despite its severe impact, has long been neglected in maternal health discourse and planning. As cases continue to rise globally, the need for tailored care approaches has become urgent.

Key Recommendations and Interventions

The WHO guideline offers a comprehensive framework for healthcare providers and policy-makers, with recommendations that consider the realities of healthcare delivery in both well-resourced and underserved environments. Among the central proposals are:

• Folic acid and iron supplementation: Adjusted protocols for pregnant women, especially those in malaria-endemic areas, to prevent anaemia and reduce infection risk.

• Pain management strategies: Tailored approaches for managing sickle cell crises with safe and effective medications.

• Infection prevention: Immunizations, antibiotic prophylaxis, and hygiene education to reduce the risk of bacterial and viral infections during pregnancy.

• Blood clot prevention: Monitoring and preventive use of anticoagulants where appropriate.

• Prophylactic blood transfusions: Use in select cases to reduce the frequency of sickle cell crises and improve maternal and fetal oxygenation.

• Enhanced maternal-fetal surveillance: Routine screening and monitoring of maternal and fetal well-being throughout pregnancy, with access to specialized obstetric and neonatal care.

These interventions aim to improve clinical decision-making and encourage multidisciplinary care models involving hematologists, obstetricians, midwives, pediatricians, and other specialists.

Empowering Informed Health Choices

Dr. Doris Chou, WHO Medical Officer and lead author of the guideline, stressed the importance of personalized, proactive care planning for women with SCD.

“Women should be able to consult with knowledgeable care providers early in pregnancy—or ideally before conception—so that they can understand their treatment options and prepare for potential complications,” Dr. Chou said. “With appropriate counselling, these women can make informed choices that support their health and that of their baby.”

Chou emphasized that healthcare professionals should engage in shared decision-making with patients, especially in light of the complexities associated with sickle cell disease. Treatment plans should be individualized and designed to minimize risks while ensuring adequate support during each stage of pregnancy.

A Global Health Burden on the Rise

Sickle cell disease is currently affecting an estimated 7.7 million people worldwide—a number that has surged by over 40% since the year 2000. The disease accounts for approximately 375,000 deaths annually, according to WHO data. Notably, sub-Saharan Africa bears the brunt of the burden, representing roughly 80% of global cases.

Aside from Africa, high prevalence rates are also seen in malaria-prone regions of the Middle East, the Caribbean, and parts of South Asia. Many of these areas continue to struggle with insufficient healthcare infrastructure, poor disease awareness, and lack of access to genetic screening or prenatal care—all factors that contribute to the high fatality rates seen among women and newborns.

Need for Political Will and Investment

WHO’s announcement also serves as a call to action for governments and global health partners to allocate more resources to combating sickle cell disease. Experts argue that investments in early diagnosis, public education, and healthcare workforce training are critical to reducing mortality rates and improving quality of life for affected individuals.

Despite the growing burden, sickle cell disease continues to receive limited attention in global health financing and policy frameworks. Dr. Allotey urged development agencies and governments to step up their efforts, particularly in integrating SCD into maternal and child health programs.

Path Forward

With this new guideline, WHO hopes to spark a global shift toward evidence-based care for pregnant women living with sickle cell disease. By setting clinical standards and encouraging collaboration across disciplines, the organization aims to support national health systems in improving outcomes for both mothers and their babies.

“In the face of rising global cases, this guidance offers a roadmap toward safer pregnancies and better health outcomes for women affected by this life-threatening disease,” said Dr. Allotey.

WHO also plans to roll out training materials and implementation tools to support the adoption of the new guideline, particularly in resource-limited countries where health systems face the greatest challenges.